Feeling Worse After B12 Injection? - Pernicious Anaemi...

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Feeling Worse After B12 Injection?

Quinny99 profile image
44 Replies

Hi, so I have received my 6 shots of B12. It’s the one that begins with an H (I can’t spell it). My B12 Levels were at 172, and the doctors kept insisting that it was my diet that was causing this (baring in mind I eat meat and everything fortified with B12). So I was wondering if there’s any conditions that may affect this?

Also, after 4/5 days receiving the first of my shots, I started getting more numbness and tingling in my hands and feet, and it’s progressively turned into having pains In my hands on and off (sometimes sharp stabbing pains). I am still tired (I take iron tablets 3 times a day). I’ve also experienced prolonged pains in my upper left part of my stomach, which happens every so often. I’ve also noticed that I am more sensitive to the cold and heat, ( so I may be freezing cold but to others they’re warm/ if I get Into a warm bath it’s too hot). I’m a lot more out of breath and experiencing dizziness. Lastly, I’ve been waking up from having leg cramps and my feet feel like they’re wanting to cramp constantly.

I’ve been to the doctors about the see symptoms and I need to have another blood test. I’m just worried that these symptoms may be because of the injections or something serious.

Advice please, many thanks!!

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Quinny99
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clivealive profile image
clivealiveForum Support

Hi Quinny99 It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels were below the bottom of the range.

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

You appear to have "ruled out" the top line but do you "see yourself" among any of the other people?

If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Quinny99 profile image
Quinny99 in reply toclivealive

Thank you for all the information. The only thing I can say is that my mum and nan both have anaemia, but I think it’s my ferritin levels that are low (they’re at 9) and that’s why I have to take 3 iron tablets a day. I don’t think my actual iron levels are low and the doctor said that I am not anaemic. So my guess it’s to do with my stomach? But I won’t know until I get the blood test.

Many thanks!!

Milley2 profile image
Milley2 in reply toclivealive

If the b12 FERRITEN folate needs to be in balance us FERRITEN 40 to low ?

Had b12 low was on injections and had h pylori

That’s being treated folate level is ok

So I’m still not well thinking I may need iron ?

svetkellles profile image
svetkellles in reply toclivealive

Vitamin B12 - iherb.com/pr/california-gol... It's my first time to take vitamin B12 in liquid form, but it's easier to eat and absorbs better than I thought. I chose high-efficiency lysoformal because it's the trending vitamin these days, so I think it's better than other B vitamins. 5% discount coupon code: AID8235

clivealive profile image
clivealiveForum Support in reply tosvetkellles

That looks good as long as you don't have digestion issues or Pernicious Anaemia whereby you cannot absorb B12 via the gut. Ideal for Vegans/Vegetarians with normal healthy stomachs.

natcap1 profile image
natcap1

Hi,

I’m experiencing exactly the same as you. I had my 6 shots plus one other (last shot 1 week ago). I have a day where I feel ok and then a day where everything seems to start up again. Also my stomach that I had thought was much better before the injections is really playing up again. I’m hoping that this is due to the B12 ‘healing process’ too. I’ve decided to get my potassium, folate and iron levels checked asap, but if they are ok to just rest lots and give my body a chance to recover. I thought I would feel better straight away, but I suspect I’ve been low for years, and so it make sense that recovery might take time!

I’d be interested to know how you get on. I’ll let you know my progress too. It’s difficult to feel ok with what is happening, if you don’t know others that have had similar experiences.

Av42 profile image
Av42 in reply tonatcap1

After having the loading doses just over a year ago , I thought the doctor had got it completely wrong and they were trying to kill me . After a few weeks I felt ok but not completely myself and resigned mystic the fact this was better than nothing and would be almost myself forever . After six months I was completely myself again and live very well on three monthly injections. I was on prescribed folate but when that finished I now take a multi vitamin every day . I know I’m lucky to feel like this but there is hope you’ll get back to normal too . Good luck . Symptoms I had after loading were spots everywhere , dizziness, nausea and fogginess in head which were all more extreme than before loading.

Quinny99 profile image
Quinny99 in reply tonatcap1

Thank you so much!! It’s quite scary this whole b12 thing. It had literally come from nowhere. For someone who hates needles this has become a difficult thing to adjust to. I will update and let you know how I get on.

PearlH profile image
PearlH

Me too, feeling even worse than before the injections. Extreme muscle pains, tingling, tinnitus, dizziness, fatigue, twitching, cramps, actually often feel like I have the flu but no fever. I'm injections for 2 months now, my GP and GI still refuse to run my blood test saying it is not needed :( The more injections I get (I started injecting myself every 48 hours 500 mcg hydroxycobalamin because 1000 mcg was unbearable to deal with feeling sick for days) the more pain and symptoms increase.

I have B6 toxicity, P.A. and MTHFR C677T but GP and GI don't know anything about this and won't test my blood on folate, iron, magnesium, potassium, homocysteine, MMA or even my vits. Eating bananas and trying a very healthy diet but the increase of symptoms and pain make me very, very insecure and scared. So I will follow Ur story and send U a big hug as I fully understand how U feel x

Quinny99 profile image
Quinny99 in reply toPearlH

Thank you so much!! I’m just hoping that these symptoms will get better. It’s a pain being in pain all the time! It just seems that the doctor doesn’t take all of this seriously or thinks that I am making all of it up. But everyone reacts to everything differently. I hope you get the answers you’re looking for too!

PearlH profile image
PearlH in reply toQuinny99

I know...we are left in the dark :( Docs don't care (maybe a few do, but in generally they don't) as they are not educated well enough to understand what impact this has on patients. It's truly huge agony, all the pain, the neurological symptoms, the brain fog, tingling, headaches, fatigue and so on...reading stories here do reassure me though that is due to the healing process, so we must keep the faith...Feeling scared and insecure about the symptoms bothers me the most, because docs say it is highly unusual to feel the way I do :/ But like I said, they often don't care and not aware of what is really going on. So all the advice and info we can read here helps to deal with the agony...

Quinny99 profile image
Quinny99 in reply toPearlH

That is true that many doctors aren’t well educated about this. I’ve been to a few and none of them can tell me anything. I only got a breakthrough with this one doctor who said that I needed a blood test. If it’s none of the things he’s testing, he said it’s probably anxiety. Which it could be that’s making all of the physical symptoms happen. But I don’t think it is anxiety. I don’t know. It’s tough.

Milley2 profile image
Milley2 in reply toPearlH

Are you anybody better ? How are you managing things now

Zantegirl profile image
Zantegirl in reply toQuinny99

Hi Quinny99

I’m new to this site

Diagnosis with PA a month ago & had my 6 loading injections last one last week

Feel awful too , worse 😭 my b12 was 150 & serum iron 8

Spots have s

Also now started, really hope things improve soon

How are you feeling now? X x

Quinny99 profile image
Quinny99 in reply toZantegirl

Since after having my 6 B12 doses, the first month of having them, I went back to the doctors because of feelings so rubbish, and it seemed like they blamed everything on my anxiety and sent me off for a blood test anyway. The second month I could tell things were improving. I could go out jogging and I felt great. Then after about two weeks I got a cold then I was back to how I was. So I’m about to go for my first injection (as I have them once every 3 months). But I’m just not well all the time, constantly in pain. I’m just hoping that this injection will make me better. I still haven’t found out my blood test results where I have been so busy. It’s supposed to check my calcium levels, iron levels, and to see if there’s any inflammation in my stomach +other things. But I haven’t had a diagnosis of anything yet, and they’re still insisting it’s my diet, when I 100% know it’s not.

I hope this helps.

Lorna12345 profile image
Lorna12345 in reply toQuinny99

Can you please describe your pain?where is it? Character (stabbing,burning,very deep??)?how often?

KellyDBrille profile image
KellyDBrille in reply toPearlH

PearlH -- not sure if you'll see this, but B6 lowers FOLATE. So if you can get some folinic or methylfolate, that will help. And the B12 should help as well. Hope you're feeling better!

VMITCHELL78 profile image
VMITCHELL78

Hi quinny99

I too experienced this, despite my gp telling me I would feel like a new woman after a few shots I felt worse. I suffered extreme fatigue, tingling lips, fingers and just a general lack of lust for life. It does get better, just make sure you get the next 2 or 3 monthly top up jabs...I've had to pay privately for mine as nhs seem to think a reading of 305 is ok...when it's defiantly not.

Good luck and I wish you well on your recovery xxx

Quinny99 profile image
Quinny99 in reply toVMITCHELL78

Thank you!!

natcap1 profile image
natcap1

Hi Quinny99 I was wondering if you felt any better since your last post. It’s interesting how many people do not instantly feel better from the B12 loading doses.

Quinny99 profile image
Quinny99 in reply tonatcap1

Hi sorry, I’m going to go for my first jab since the 6 lots of jabs. After the jabs I had like one month where I felt great, like I could go out running and I’d be fine. Then I got a cold and I haven’t been the same since. I just feel like rubbish all the time and I don’t know what to do.

natcap1 profile image
natcap1 in reply toQuinny99

No problem, I just came across your reply. Hang in there it will get better. I just had my first shot after the loading doses three days ago. This time I felt anxious for about 10 mins that evening, tired and achy the next day, but that has been it. A very different experience to the loading doses. I’m feeling almost normal again energy wise. Tingling and numbness has gone. So I’m sure you will get there. I haven’t attempted to get back to running or cycling yet, to let my body recover a bit. But I feel like I could try it in the next couple of weeks.

Sadly my much improved digestion has gone downhill again. So am still not feeling great and was hoping the B12 would improve it. Can’t have everything I suppose!

Quinny99 profile image
Quinny99 in reply tonatcap1

I just don’t know what to do that will improve my health. I can’t do much until I have some sort of diagnosis so I can sort myself out. It’s frustrating when no doctors can pinpoint on what the issues are. Anyways, I hope you get better!!

natcap1 profile image
natcap1 in reply toQuinny99

I do hope you get to the bottom of this. If you get the blood results I’m sure that will help. You could be low in iron now. It might explain why you felt better at first and then feel unwell again. It can also cause anxiety, along with the low B12. Folate could be a problem too. I’m just getting up to speed on what needs doing e.g. getting the levels of iron and folate checked. But a cooperative GP is what you need. It’s good you are getting the B12 and take heart that it seems common to feel worse before you get better.

If you have Pernicious Aneamia then it is possible you have other autoimmune conditions, for instance Hashimoto’s (where the immune system attack’s the thyroid), type 1 diabetes, Sjogren’s Syndrome etc. Depending on symptoms your GP should test for these too.

I hope you start to feel better soon.

Quinny99 profile image
Quinny99 in reply tonatcap1

Thank you so much. I just need to sort myself out as it’s stopping me from going to University lectures and stuff like that. Like it needs to be sorted because it’s affecting my everyday life.

I hope you get better too.

Drewtheo profile image
Drewtheo in reply tonatcap1

I feel the same I don't feel any better my doctor thinks it's in my head as I should feel so much better I feel soow

Welshx profile image
Welshx

How are you feeling now? I'm on loading injections and feeling worse

Welshx profile image
Welshx

Hi how are you feeling now.. just reading all these threads and it sounds like what I'm going through now

Dudin profile image
Dudin

Hello! And How are you feeling now?

AdhyAdhy profile image
AdhyAdhy

Hi Quinny99, Did something helped with your symptoms

Quinny99 profile image
Quinny99 in reply toAdhyAdhy

Hi, I still get foot cramps and I have numbness in my left leg and left hand.

How are you?

User2020-1 profile image
User2020-1

Hi Quinny99 - how are you feeling now?I experience a huge spike in symptoms after an injection too….

Quinny99 profile image
Quinny99 in reply toUser2020-1

I dont get them symptoms as much anymore, I still get foot cramps every so often and I have numbness in my left leg and left hand. No doctors have kept up with blood tests to see if I'm any better or not.

How are you?

Lindy2shoes profile image
Lindy2shoes

Hi there, I’m in the same boat with B12 injection. Very new to this so any advice is hugely appreciated. Feeling awful for 2 weeks now after only second shot. Muscle aches, constant pain & horrible fatigue. My vision is blurry at night when I’m tired also. I have MTHFR mutation and wonder if this might be why they are not having a good effect on me. Does anyone have information about how long this takes to wear off or is there a way to detox yourself quicker? I need to be ok for my kids 😭

Jillr77 profile image
Jillr77 in reply toLindy2shoes

Hi, ivr had my 6 loaded injections the last one was last week, i have to be honest i felt like a whole rush of new energy for a few days which i thought brilliant, but now 1 week later ive developed numbness in my finger that i never had before although i had numbness in my 2 feet in certain parts thtas coming back and starting to feel tingling sensation all over again. I think my energy levels are getting lower again but not as bad as they were before. I heard that u can feel worse after injections for a while then it improves which i really hope it does i just want to be back to full energy like i was a few days after injections. I have pernicious anemia is that what u have too?

It Sounds like B6 overdose. i know that your question is 4yrs old and i hope youve found the answer if not , latest findings on B6 toxicity does seem to match most of your symptoms. hope this answer is helpful

Technoid profile image
Technoid in reply to

B6 overdose resulting in neurological symptoms would require daily B6 doses of 100mg for months to years (or B6 injections). Normally even high dose B6 complexes are not allowed to provide B6 over 25mg, which is the tolerable upper limit. Unless someone is getting B6 over 25mg a day for quite a long time, its highly unlikely for adverse effects to be seen.

Sharp stabbing pains in the hands after B12 repletion is normal/expected due to nerve repair starting omce treatment begins. I had plenty of this. It's extremely unlikely such symptoms are B6 related. B6 overdose is real and can be dangerous but it's a lot harder to get in trouble with B6 than many people (including doctors) seem to think. You would have to be repeatedly going above the tolerable upper intake limit every day for quite a long time before you would run into issues. Anyone staying below 25mg of B6 a day is unlikely to run into problems, let alone neurological symptoms (which are only seen at 100mg/day).

The original poster's symptoms sound like normal B12 neurological recovery symptoms to me - similar to those experienced by me and many others here. There may have been other things in the mix such as Iron etc, but its highly unlikely there's a B6 toxicity issue.

It Sounds like B6 overdose. i know that your question is 4yrs old and i hope youve found the answer if not , latest findings on B6 toxicity does seem to match most of your symptoms. hope this answer is helpful

tga.gov.au/news/safety-upda...

Technoid profile image
Technoid in reply to

Thanks. I'm not convinced by the reports they provide that they have conclusive evidence of peripheral neuropathy from B6 at doses under 25mg. The paper they provide mentions one report of peripheral neuropathy associated with 8.7mg of B6. But a single report doesnt exact make for a conclusive case - there are many causes of peripheral neuropathy - were they all excluded in this single case leaving only B6 as the cause? Pretty dubious.

I personally usually advise people to stick to RDA level vitamins and if they want to go higher with B6 (based on labs), to stay under 10mg which I still think is a reasonable level of caution considering all the evidence.

And to get back to the point here, the original poster mentions a low B12 level and receiving treatment for same, but not taking any additional B vitamins so the simplest explanation here is that they are experiencing neurological damage from B12 deficiency, rather than anything to do with B6.

We can all agree that B6 is a possible cause of peripheral neuropathy but based on the limited information here, everything points to the neuropathy being from a B12 deficiency, not a B6 overdose.

was making sure every one was aware, all good. id be more worried about whats causeing these symptoms ? because obviously b12 medications are being used as a mere bandaid , 20yrs for some of you?

Technoid profile image
Technoid in reply to

Pernicious Anemia is a permanent condition with no known cure. Regular provision of intravenous B12 in such circumstances is necessary for the continuation of life - its not a band-aid. Neurological damage from B12 deficiency is very slow to heal, often imperfectly healed and if not treated in time, may be permanent to at least some degree.

B12 is needed to maintain and repair the myelin sheath that protects nerves. Without sufficient B12, nerves become exposed and are easily damaged resulting in sensory and motor dysfunction. This includes the nerve cells(neurons) of the brain. Provision of B12 allows repair to begin but the actual healing process itself is open-ended (months to years) depending on how much damage has been done. Getting B12 levels into normal range or overrange does not magically fix this damage overnight, it takes a lot of work - nerves regrow at 1mm a day for example, and often levels need to be maintained at very high ranges to alleviate symptoms.

in reply toTechnoid

health.usnews.com/health-ne...

Technoid profile image
Technoid in reply to

I guess that your sharing of this article is to make the point that B12 deficiency may have a cause other than pernicious anemia. I'm aware of that - I do not have PA myself but had a B12 deficiency. Getting to the root cause of the deficiency is important but the treatment is the same regardless since the deficiency effects are the same regardless of the cause. Unfortunately, many never receive a root cause diagnosis for various reasons including the poor quality of tests for pernicious anemia, the incompetence and/or disinterest of many doctors in looking for a cause for the deficiency etc.

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